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OCD

Only last week I had my first experience with an internet ‘Troll,’ someone for the first time in my 18 months of blogging wrote a negative comment about my personal journey and I feel that I handled it a whole lot better than when I first started sharing our journey in March 2016.
I noticed that a relevant article to my journey to adult assessment for Autistic Spectrum Condition (ASC,) was shared via a support group I belong to called ‘Mums on the Spectrum,’ which is a group of just over 1,800 mothers who are on the autistic spectrum. This was the article shared:www.healthy-holistic-living.com
This post was shared from a Facebook page about ‘Vegetable gardening,’ which didn’t matter to me, but when read the comments a lot of the posters were complaining about why a post about recognising autism later on in life, in women was shared on a vegetable gardening page. So, I wrote a summary about my journey with misdiagnoses and how each one could be seen as traits from someone on the autistic spectrum and I also wrote how it didn’t matter where this post is shared as it is very good for awareness and understanding. A poster was complaining about individuals who “just seek a label,” and I realised that because I belong to so many supportive networks such as my SEND bloggers group, that I forget that there are still so many people out there that just don’t understand about autism, or even want to try to understand, even in today’s society and wonderful nationwide awareness campaigns from the National Autistic Society (NAS.)
The worst comment I had written back to me was:

“You have been diagnosed with all these mental health issues and still decided to have a child? Are you sure you are fit to be a mother?”

My immediate response was to justify myself and referred to the ‘Heads Together,’ campaign that is being promoted via the Royal Family members, I wanted to get across the message that in 2017, it’s ok to talk about our mental health, not like in the 90s or early 2000’s when I just felt too ashamed to talk to anyone or admit that I had such issues, even to a GP or any other professional. Therefore, I didn’t receive the appropriate help and support. I gave this individual a reason for every one of my misdiagnoses, or in the case of anxiety and depression – a co-morbid condition that had resulted from spending years and years of ‘masking’ my difficulties in desperation to appear ‘normal’ in public. I explained that:
• In 1996, at the age of 14, I was diagnosed with Anxiety and Depression – the reason I believe that I was aware more that I was ‘different’ to my peers, I felt different and I thought differently, also reminded through constantly bullying every day at school.
• In 1999, at the age of 17, I was diagnosed with OCD (Obsessive, Compulsive Disorder,) and an eating disorder which my mum has described to me that this was in fact Anorexia, although I wasn’t aware of this at the time. As a teenager there was a pressure to be thin, but my eating issues were more down to texture, which I believe was a sensory processing issue and I’ve learnt over time that this is why I prefer dry and crunchy foods, rather than soft, sticky or soft textures of food. My 2 girls are also the same. I can remember gagging on a home-made stew because I didn’t like the texture. The OCD was down to a desire to keep things in order to have control over some aspect of my life as I felt so out of control at school, in that I felt I was being watched and picked on at every opportunity through people that didn’t understand me and would highlight my differences as if I should be ashamed of myself. At 17 I liked straight lines and absolutely every single item in my bedroom would have a specific place and if these items got moved I would know and move them straight back into place. I have also been specific since the age of 17 where my personal items are, and I will check every so often if I have my keys, purse and phone in my handbag as I have a fear of losing them. When completing my online course on ‘Understanding Autism,’ I learnt that OCD can be a co-morbid condition alongside Autism, also that I love to keep things in a routine, and if that routine changes It causes a lot of anxiety. The National Autistic Society (NAS) states that: “Obsessions, repetitive behaviour and routines can be a source of enjoyment for autistic people and a way of coping with everyday life.” Source: www.autism.org.uk
• In 2008, at the age of 26, I suffered a Psychotic Episode, one of the scariest experiences of my whole life. Mind – states that: “Psychosis (also called a psychotic episode) is when you perceive or interpret reality in a very different way from people around you. You might be said to ‘lose touch with reality.” The one thing that was very noticeable from this episode was my very high level of paranoia. This happened just after I got married, a huge event to plan, where everyone’s focus for that 1 day was on me, I was working at a high level at work, full time and living away from my parents – a 4 hour drive away. On reflection planning a wedding, on the wedding day and my level of work at that time all required a great deal of ‘masking,’ appearing on the surface as ‘Neurotypical,’ and my brain just one day said, “I’ve had enough,” cue sleepless nights and my body not agreeing with Fluoxetine and the GPs in that area not knowing my background, and not enough awareness of how females on the autistic spectrum present, another missed opportunity to be properly diagnosed. This Psychotic episode lead to the eventual diagnosis of Bi Polar disorder, which the Psychiatrist I saw back in Worcestershire when I returned home, said that it was in fact a ‘severe episode of depression,’ and not in fact Bi Polar, but to this day I still have this ‘label,’ on my medical file. When I ‘mask’ as a female on the autistic spectrum, this is very taxing on my brain and I will suddenly break down and can no longer cope or see things rationally.
• In 2015, at the age of 33, I was diagnosed with Postnatal Depression which a health visitor had failed to spot and this wasn’t picked up until 5 months after the birth of my second child when I took myself along to the GP as I knew something wasn’t right. And later, in 2016 at the age of 34, I still have a diagnosis of anxiety and depression, but more anxiety on my file. To date I honestly believe that this current diagnosis is a result of ‘masking’ my difficulties for so long and not being listened to or believed in terms of my own daughter’s autistic traits in the home environment, having 2 children with additional needs, fighting for support, attending all the appointments, etc all takes its toll on me.

With all of this swimming in my head, I hope that my upcoming adult assessment for Autistic Spectrum Condition (ASC,) will show that a diagnosis of ASC would be the answer to the struggles I’ve had from childhood, and especially from the teenage years and realisation of being ‘different.’
I therefore wanted to justify my ‘choice’ for having children and I wanted to tell the original poster that asked if I “should really be a mother?” I thought about the 1,800+ group of mothers on the autistic spectrum group where I am a member, I thought about how all of these mothers would also feel offended by this negative comment. We cannot help the way our brains are wired, and I started to think that just because Autism is often seen as an ‘Invisible’ disability, would the poster also think that people who use a wheelchair for mobility shouldn’t be parents? Would they also be in the belief that parents who are blind or deaf shouldn’t be parents? I’ve also heard of instances where friends who have children with more severe additional needs have also been told that they “shouldn’t be parents.” Who is to tell us if we are or aren’t fit to be parents? The midwife during my ‘booking in’ appointment? The first person I saw regarding the pregnancy, I was honest about my previous ‘diagnoses’ and I was monitored throughout the pregnancy but not once was I told that I “shouldn’t have this baby.” I didn’t require a specialist appointment with a psychiatrist all throughout the pregnancy. Mother’s on the autistic spectrum are very good mother’s we have the same right as ‘Neurotypicals’ people to become a parent. Not once have I had a ‘meltdown’ in front of my children, I hold it in until they are asleep. I eat well, I do order certain items but becoming a parent has helped with the OCD more as I simply don’t have the time to keep things in the same order as they once were! I don’t stim in front of my children, (stimming or self-regulatory behaviours,) I rub my hands together once they are in bed if I need to. But even if I did stim or meltdown, it wouldn’t make me a bad parent, I shouldn’t feel ashamed by being the person I am. I have had 13 years of working with early years children and why shouldn’t I have my own children? In terms of my own social anxieties, I have always been aware that I want my children to interact with others, even if I struggle socially I have still taken my daughters to toddler/stay and play groups and it’s helped me to mix with other parents.

When I found out I was going to have a child, I had no idea at that point that I could even be on the autistic spectrum and therefore my partner and I didn’t have the discussion on any implications this may have, however, I have always maintained that my children have only improved the way I am and helped me with self-realisation and accepting myself. The main aspect that I’ve learnt is how to care for others before that of myself, I had practice in this area when working in childcare, but I was very much thinking about myself before I had the children. I have learnt that their needs come before mine, I still have to look after myself in order to care for them in the best way I can, but I will now think about their needs before my own, which is a huge step for me.

This is a question that comes up frequently during appointments for Lou. I must admit I’ve quietly thought to myself : why does it matter if she does?!? The trouble is I don’t always grasp what people are trying to get at!

We have been noticing more lately as Lou approaches 5 years old, that she prefers to line her toys up, early assessment reports would always say: “Doesn’t appear to line things up.” Then I’m guessing this wouldn’t have been seen unless it was in the comfort and safety of her own home. Recently Lou has developed an interest in little characters such as ‘Shopkins,’ ‘Trolls’ from the recent movie, ‘Peppa Pig’ and ‘Tsum Tsum’ characters, she will also line up her Barbie dolls and wooden bricks, anything that’s within her reach really. It always amazes me how she knows the name of every single character and will name them as they are placed into line: “there you go, into the line Stawberry Kiss.” She also tells me every day who has been the: ‘Line Leader’ at school!

I’m always interested in the theory behind these things and started to think that during my experience in Early Years Education that I’ve seen many Neurotypical (NT) children perfectly happy to line things up, in the chaos of a toddler or child’s mind I can see how to order and line objects such as toys can provide some organisation and control to the many things that are loading into their brains as they are like ‘sponges’ taking in so much information about the world around them.

Then I starting to think about my ‘ways’ (as we describe them in our household!) and thought back to being a teenager that had a certain place for every single ornament on shelves, books and CD’s in alphabetical order, everything in it’s own place and if any item was ever moved I could tell straight away and feel very frustrated and this feeling would only go away when I moved the object back into it’s certain place. This reminded me that when Lou is lining her toys up she prefers to be on her own and if her sister, Moo (almost 2) moves a character out of the line that Lou is making, or if a character falls down then the whole lot will get thrown across the room and this will often result in a meltdown.

“I told you to stand up Cooper!” (Said in an angry voice.)
This is a character from The Trolls movie that has a very long neck and is notorious for falling over out of line! Lou will say “he’s my favourite because he ‘poos’ cupcakes!

I read that:

“A disruption in the order of alignment of the line of toys might be upsetting because lining up the toys provides comfort and a sense of control.”

I think that by having my children I did have to adapt and mellow out a bit in terms of taking this sort of control in my life as I learnt to dedicate my time to them rather than spending time cleaning and lining up. At times of more stress I will have a burning desire to clean and organise more and I find this is a way to reduce my anxieties and gain back some control. I cannot help that my brain is saying to me that I like the way a room looks after it’s been cleaned and organised, and it’s the control and organising the mind aspects I guess that prompts Lou to line her toys up. I guess that after a day of demands and holding in her sensory overloads at school could result in coming home and feeling better after lining her toys up.

One thing that I do want to try and help with is that this doesn’t become more of a problem as Lou teaches her teenage years or adulthood, as I couldn’t revise for my GCSE’s or do any University work until a room was tidy, if I did try and sit down and study before tidying I would be distracted by dust on the TV, bits on the floor and I’d just have to get up and clean it, often resulting in working in to the early hours of the morning and resulting in a ‘burn-out’ whilst revising for my GCSEs, GNVQ at college and University degree and I’m still like it now – before I start work on my laptop I have to clean up first! The difference is that my lining up and order verges on OCD that is treated via my GP, it is an obsessive nature that has grown with me over time and I can’t even remember if I lined up my toys as a child! I worry that Lou has picked up on this but simply cannot help the way that my brain is wired.

This is why I sent the relevant information to the ‘Umbrella Pathway’ panel (assessment for ASD in Worcestershire.) As for now I will not encourage Lou to stop lining things up as I can see that it’s therapeutic for her at the moment, and she’s decided to do it on her own agenda, but early intervention is key and I want her to avoid it becoming more and more obsessive as she gets older, to prevent it interfering with other aspects of her life like her school work, or relationships as it takes a lot of Lou’s daddy to understand my ‘ways!’ And not everyone could put up with it!
I’m always fascinated to hear other people’s experiences about lining things up, whether a child or adult. I like to find out the theory behind it all. If anyone would like to share a story either named or anonymously I’d be happy to share.

My own design which describes my journey. The butterfly is a symbol of peace and freedom to me. I’d love a Semi-Colon butterfly tattoo (when I’ve found out if I’m allergic to the dye.)

I usually prefer to write about Lou’s journey, not my own.

But on days like today I remember back to 2008/9 when I had, what I now describe as my ‘tricky time.’ I prefer to write all of my memories from this time to my online books. I’ve always carried a feeling of being ashamed of suffering a nervous breakdown, but what I’ve learnt over time is that it happened and I’m here to tell the story and therefore:

“My story isn’t over yet!”

(Source: Slogan from Semi-Colon project.)

I was homesick, 3 hours from where I grew up, I hadn’t really branched out to make a lot of new friends outside of where I worked as I didn’t feel that many people ‘got’ me. I had a bad reaction to some anti depressants and it all went a bit down hill from there. I remember feeling so very scared because I didn’t feel in control of my own body and I couldn’t trust anyone around me due to the paranoia I was feeling at that time. I have this tremendous pang of guilty because people did get hurt at this time, lives were changed down to me but it’s not like I chose for the black cloud to descend on me 😦

I could have stayed feeling guilty forever, I could have let it consume me, but I now take the approach that:

“Everything happens for a reason.”

And I wouldn’t be on the path I am today if these events hadn’t happened. I had to go through a tremendously rubbish path to enable me to learn about myself and become the strong person that I am today.

This event in my life sparked some (still mainly) unanswered questions about myself, as a child and also an an adult. I suffered brain trauma at birth, could this have any effects on my mental health? (Another topic for my ongoing research,) although no one is to ‘blame’ all I can do is learn about myself and how I can go about to ensure I can function. I have questions about:

– Depression

– Anxiety – (in particular, social anxiety.)

– OCD tenancies

– Undiagnosed Autism? Particularly Asperger’s Syndrome.

– Bi Polar? A huge question mark as I no longer have ‘high’ episodes, more on an even keel.

– Highly Sensitive Person (HSP.) As suggested by a great counsellor I saw.

…What I have got are 2 beautiful children and a partner that understands me, for me, like no other person has (except my mum!) Ever! I’m now back, where I feel that I belong, back where I grew up and in familiar terratory. With people close by that would spot straight away if I didn’t seem right. My issues have only meant that I’ve ever had a few weeks away from working, I’ve been able to do a job that I so desperately love, that allows me to forget about my worries, for over 12 years. One of my biggest worries is that my issues would stop my future career prospects as my fear was that people would ‘think’ that I wasn’t suitable to work with children, but it has never stopped me, it’s one of the elements where I tell myself “keep going, your good at it!” When I run my music sessions currently, and I see the children are smiling and enjoying themselves I think to myself “this is what I was born to do.”

I do worry that I could have future ‘occurance’ but I desperately try not to dwell on it, I worry that my daughter will suffer the same worries as a teenager and throughout stressful times in life. But I can be the one who can spot her troubles and get the appropriate help if needed.

Mental illness needs to be talked about, for years it felt like my ‘dirty secret’ I was so worried and moulded on other people’s impressions of me. What are people with a mental illness supposed to act like? Do people expect me to have a massive meltdown in the middle of a public place?! Do people expect me to sit and cry all day? In fact I find it very difficult to cry, I have only cried twice in the past month!

We need to talk to other people who are going through, or have been through the same experiences, I have a few friends and my sister who I could be completely honest with about how I’m feeling and can talk openly about my experiences, I recently chatted to one friend for 3 hours about how we perceive the world and people in public, and realised that it’s not just me who thinks a certain way! Which was a massive relief for me! I’ve only had one experience so far, of sharing my problems, (regarding a view I have on a particularly sensitive subject,) where this person really couldn’t understand me, and later referred to me as “ungrateful” amd “selfish,” (needless-to-say, I no longer associate with this person!)

This was one of my first original quotes that I produced after starting my Blog in March 2016. Blogging to me is fantastic therapy. There are so many thoughts going around in my head, it’s a relief to get them out and onto the Blog.

One of my biggest hurdles was plucking up the courage to tell my GP how I was really feeling, the GP’s can only really help if you open up, something that I’ve learnt over time. I was so worried about being dismissed or being told that I was “making it all up.” But thankfully, this has never happened. If I have a problem I write it down and hand it to my GP, for me, I am the sort of person who finds it easier to write things down, rather than to make eye contact on a particular sensitive topic. If you, or anyone you know, are feeling that you need to talk to your GP, my advice would be to write it all down and post or take it in personally.

Having OCD is really difficult when your a parent I wish it would just disappear as it just doesn’t fit in with family life!
I’ve tried to stop myself picking up every sock, toy or other item that’s lying on the floor, but now find myself doing it without realising!
OCD first made an appearance when I was about 14, I was stressed about school, being picked on daily and just about the only thing I had control over was the way my room was tidied. Everything was ordered, lined up and spacious.
I hate my hands being dirty, I don’t mind getting them dirty with gardening, messy play, etc but I can’t wait to wash them! I like it when objects are ordered and in line, and shock horror! I caught Lou only today lining up bathroom products!
More to come on this topic!